Hodgkin lymphoma in children

Hodgkin lymphoma| is a cancer of the lymphatic system. Fewer than 60 children in the UK develop Hodgkin lymphoma each year. It can affect children at any age, but it’s more common in teenagers and young adults. It’s also more common in boys than girls.

This information is about Hodgkin lymphoma in children. You may find it helpful to read it alongside our section on children’s cancers, which contains more information about cancers in children, their diagnosis and treatment, and the support services available.

We hope this information answers your questions. If you have any further questions, you can ask a nurse or doctor involved in your child's treatment.

There are two main types of Hodgkin lymphoma: classical lymphoma, which affects 95% of patients, and lymphocyte predominent Hodgkin lymphoma (LPHL), which only affects 5% of patients. This information is about classical Hodgkin lymphoma, but it includes a short section about LPHL.

The lymphatic system is made up of the bone marrow, thymus, spleen, and lymph nodes (or lymph glands). Lymph nodes are connected by a network of tiny lymphatic vessels that contain lymph fluid. Lymphomas can start anywhere in the lymphatic system, but Hodgkin lymphoma is most likely to start in the lymph nodes in the neck. The other areas where lymph nodes are likely to swell are above the collar bone, the armpit, the groin and inside the chest. Glands can swell in these areas as part of the body's response to infection, not just cancer, which is why a biopsy is needed to diagnose lymphoma.

The number of lymph nodes varies from one part of the body to another. In some parts of the body, there are very few lymph nodes, whereas under your arm there may be 20-50.

There are two main types of lymphoma: non-Hodgkin lymphoma (NHL) and Hodgkin lymphoma (HL). Although these are both types of lymphoma, there are differences between them, which means they need different treatment.

The exact cause of Hodgkin lymphoma is not known. In most people that develop Hodgkin lymphoma, no cause is found. However, there is increasing evidence that infections, such as the virus that causes glandular fever, may play a part in the development of Hodgkin lymphoma, especially in childhood. Poor immunity may also be a risk factor for developing the disease. Very rarely, more than one member of a family may develop Hodgkin lymphoma.

The first sign of Hodgkin lymphoma is usually a painless swelling of one gland, or a group of lymph glands, which continues for some weeks or even months. The first glands that are likely to be affected are in the neck or above the collarbone, most often only on one side. However, it's important to remember that children's glands can also become swollen when they have a common infection that causes a sore throat or a cold.

If glands in the chest are affected, this can cause a cough or breathlessness. This is caused by the pressure the glands exert on the airways.

Sometimes, a child with Hodgkin lymphoma may have a high temperature (fever), night sweats, weight loss or itchy skin.

Because lymph glands can swell for lots of reasons, a biopsy is carried out to diagnose Hodgkin lymphoma. A biopsy is when a swollen lymph gland is removed and the cells are looked at under a microscope. It's a small operation which is usually done under a general anaesthetic. Sometimes only a small part of the lymph gland has to be removed, which can be done under a local anaesthetic.

If Hodgkin lymphoma is diagnosed after the biopsy, further tests are carried out to find out the exact size and position of the lymphoma, and to see whether it has spread beyond the original area. These tests include x-rays, blood tests, CT, MRI and PET scans .

Very often, a bone marrow sample will be taken. This is because the lymphoma cells can spread to the bone marrow as well as to other lymph glands.

The tests that are carried out are called staging tests. Any tests and investigations that your child needs will be explained to you. Our section on children’s cancers| gives details of what the tests and scans involve.

The stage of Hodgkin lymphoma describes the size and position of the cancer and whether it has spread. Staging is very important because the type of treatment your child receives will depend on the stage of the disease. The staging system for Hodgkin lymphoma is as follows.

Stage 1

Only one group of lymph nodes is affected and the lymphoma is only on one side of the diaphragm (the sheet of muscle under the lungs that controls breathing).

Stage 2

Two or more groups of lymph nodes are affected, but they are only on one side of the diaphragm.

Stage 3

The lymphoma is in lymph nodes both above and below the diaphragm.

Stage 4

The lymphoma has spread outside the lymph nodes to other organs such as the liver, lungs or bone marrow.

As well as giving each stage a number, doctors also use a letter code - either A,B or E .

A means your child has no symptoms (asymtematic).

B means your child has one or more of the following symptoms: a fever, night sweats or significant weight loss.

E means that the lymphoma has grown from the lymph gland to extranodal tissue (tissue in places outside the lymph nodes).

A number and letter is used in the staging of every child with Hodgkin lymphoma. This helps the doctor decide on a treatment plan for your child.

Children with Hodgkin lymphoma are usually treated with chemotherapy, but sometimes radiotherapy is also needed. The type and amount of treatment given depends on the stage of the disease when it is diagnosed. Your child’s doctor will discuss the treatment options with you.

Chemotherapy

This is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells.

It's usual for a combination of drugs to be used, which will often be given every few weeks over a number of months. A combination of drugs is used because each chemotherapy drug works in a different way. Using several drugs together increases the effectiveness of the treatment. It also means lower doses of individual drugs can be used, which may reduce the possibility of long-term side effects.

Radiotherapy

This is used in less than half of people with Hodgkin lymphoma. It treats cancer by using high energy rays that destroy the cancer cells while doing as little harm as possible to normal cells.

Treatment for Hodgkin lymphoma can cause side effects, and your child’s doctor will discuss these with you before the treatment starts. Any possible side effects will depend on the particular treatment being used and the part of the body that's being treated.

Some general side effects of chemotherapy that can occur during treatment include:

Changes to your child’s sense of taste and changes in their bowel may also happen. If your child has side effects from the treatment it’s important to discuss them with your doctor or nurse. They may be able to help reduce them.

The cure rate for Hodgkin lymphoma is very high, which means some children may develop side effects many years after treatment. The chance of developing late side effects depends on where the original tumour was, how far it spread and the type of treatment your child had.

These late side effects can affect the normal organs such as the heart, kidneys and lungs. Following treatment for Hodgkin lymphoma, there is a small increase in the risk of developing another cancer in later life. There is also a chance that fertility| may be affected. Teenage boys who are diagnosed after puberty should have the option of sperm banking before treatment starts. In this situation, sperm can be stored for possible use in later years.

Your child’s doctor or nurse will explain more about any possible late side effects.

Many children have their treatment as part of a clinical research trial. Trials aim to improve our understanding of the best way to treat an illness, usually by comparing the standard treatment with a new or modified version.

The aim of treatment for Hodgkin lymphoma is to cure the cancer with the fewest possible short- and long-term side effects. This is particularly important in childhood Hodgkin lymphoma where cure rates are high. It's important to get the balance right between curing the cancer and having the lowest risk of long-term side effects.

If appropriate, your child's medical team will talk to you about taking part in a clinical trial and will answer any questions you may have. Written information is often provided to help explain things.

Taking part in a research trial is completely voluntary, and you'll be given plenty of time to decide whether it's right for your child.

About 9 out of every 10 children who develop Hodgkin lymphoma are cured. When your child completes treatment, they will then go in to a follow-up phase, seeing doctors and nurses in out-patient clinics usually for around five years. Clinic visits will be every 3-4 months to start with, and there will be occasional scans, x-rays and blood tests done for several years after completing treatment.

If the cancer comes back, a different course of treatment can be given. If you have specific concerns about your child’s condition and treatment, it's best to discuss them with your child’s doctor, who knows the situation.

This is a rare type of Hodgkin lymphoma that affects around 5% of patients. LPHL usually grows at a slower rate than classical Hodgkin lymphoma and normally requires less intensive treatment. Young people with LPHL may have a single swollen gland or group of swollen glands in one area only, such as the neck or groin. The swollen gland often grows very slowly and may be present for many months before a biopsy and diagnosis happens. The biopsy and staging tests will be carried out as with Hodgkin lymphoma. The treatment given will depend on the stage of the disease, but most patients are diagnosed with an early stage of the disease.

LPHL is usually treated with surgery or low-dose chemotherapy. It may return many years after treatment, and further treatment may be required, but it is rarely a life-threatening condition. In rare cases, patients have advanced LPHL and receive more intensive chemotherapy. There is also a link between LPHL and developing a more aggressive non-Hodgkin lymphoma.

As a parent, the fact that your child has cancer is one of the worst situations you can be faced with. You may have many different emotions, such as fear, guilt, sadness, anger and uncertainty. These are all normal reactions and are part of the process that many parents go through at such a difficult time.

Your teams of doctors and nurses are there to help support your child and family as well as carry out treatments. It is important to discuss any difficulties you may be having with your treatment team.

Children's Cancer and Leukaemia Group (CCLG)

CCLG | coordinates research and care for children and their parents. There are 21 CCLG specialist centres for the treatment of childhood cancer and leukaemia, covering all areas of the UK and Ireland (there's a map of the centres on the website). The website has information about the CCLG, childhood cancer and leukaemia.

CLIC Sargent

CLIC Sargent| offers practical support to children and young people with cancer or leukaemia, and their families.

The Lymphoma Association

The Lymphoma Association| provides information and emotional support to people with lymphoma and their families, carers and friends.

With thanks to Dr Stephen Daw, Consultant Haemato- Oncologist, and the people affected by cancer who reviewed this edition. Reviewing information is just one way of the ways you could help when you join our Cancer Voices network.

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Working together to create information for you

We worked with the Children's Cancer and Leukaemia Group (CCLG) to write our information about children's cancer.

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